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#182466 06-16-2014 08:25 AM
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We're going into week five on the Rads :
My husband neck is becoming burned as those have said like a bad sun burn it's peeling but underneath the burned skin is red a very raw what's good for this? I have aloe Vera is this ok to use on the raw areas he's not filling too good he took some anti nausa meds: and they have knocked him out .. Hoping we get trough these next few weeks he's a strong man he's been trough a lot the last few weeks the first chemo treatment really got him down it put a big set back on the calorie intake as he was very sick for around 8/10 days and he still says he's sick from this he ate chili the day of chemo so I guess good advise don't eat anything greasy spicy food on chemo day or better yet day before .,, our two hour trip to and from to the hospital where he's taking rads is getting really tired filling on us both so I look forward to weekends !!



We see the Rads Dr, today I want to ask when will he get a CT scan to see how the tumor is looking now from all the radation I'm not sure if they will do this now or if it will be weeks after rads...I have the last treatment of rads down that will be the first week of July .. on Independence Day !! July 4th : June 17 th he's due to take a half dose of chemo .. I hope he don't get sick like before


Larry ... Rt tonsil / SCC.. HPV16 positive RT oropharynx tonsil) lymph nodes were 13mm left level 2 node / 16mm right level 2 node /12mm right level one node... pet scan was good except tonsil & nodes,, just got peg placed still able to eat/swallow undergoing rads) and chemo. ) 70gy rads..
2chemo.finished rads July 8/2014 CT Scan clear on 8/12 pet scan October-2014-Clear/ left ear tube placement 12-15-2014
Galley9399 #182471 06-16-2014 12:36 PM
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When getting chemo its imperative to drink extra water to flush those bad chemicals out of his system. The nausea I experienced with chemo was always a few days after I was given the dose.

If you havent done so already ask at the treatment center about any patient houses like Hope Lodge. Many major cancer treatment centers will have something available for patients who live 30+ miles away.

If your husband has not been using cream for his neck he should start immediately. I used Beta Val (prescription). There are many different ones available, ask the doc what he recommends. Always pat it on gently, never rub it in, let the cream soak into his skin and reapply. Never use the cream a few hours prior to going to rads but immediately afterwards dab some on.

A CT normally would not be done until 3 months post rads. Anything sooner will give false results, usually a false positive which can be terrifying to go thru.

Focus on what is within your control... your husbands intake. Every single day he should be taking in a MINIMUM of 2500+ calories and 48-64 oz of water. Push the water more around when he gets chemo. This is what will make the whole process easier.

Good luck!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Galley9399 #182474 06-16-2014 01:45 PM
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I'd only add to Christine's excellent comments that I was helped by Silver Sulfadiazine for burns. It's a thick white cream and feels very soothing going on, and I found it did the trick.

Please keep posting and asking questions. I'll be sending good thoughts your way.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Galley9399 #182475 06-16-2014 01:56 PM
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Hi Gallery, My sincere condolences for Larry's suffering, and my very best wishes for his ability to complete his continued rads. I know they are but nearly ever one us has experienced it.

Please Tell Larry that everyone on this group is pulling for him!


My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
Galley9399 #182505 06-17-2014 04:45 PM
Joined: May 2014
Posts: 56
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Thank you all so much!! I know I say this a lot but this is my go to place I she's tears on here but most are happy ones to know their are still caring wonderful people on here ..

If I could hug a few of them I would you all have truly inspired me to get this far all I think this site should be voted most dependable most honest and best internet site out their better than google ..

Christina , David ,Brian,you all are wonderful people I hope someday to cross paths with all and say thanks face to face it truly fills like family on here .. A place with love for others : I know I forgot some of the names who have given me information this far and I apologize i just have so much to keep up with I'm my personal assistant in keeping all the appointments and meds down .. I just give him the info I get here and I have to be honest it's been more reliable more useful than our own go to DR's and that's sad to say but so very true!! Again thank you a million times as I will be here trough life and trough Larry's treatments I wish all here good health and luck with their before and after treatments ..


Larry ... Rt tonsil / SCC.. HPV16 positive RT oropharynx tonsil) lymph nodes were 13mm left level 2 node / 16mm right level 2 node /12mm right level one node... pet scan was good except tonsil & nodes,, just got peg placed still able to eat/swallow undergoing rads) and chemo. ) 70gy rads..
2chemo.finished rads July 8/2014 CT Scan clear on 8/12 pet scan October-2014-Clear/ left ear tube placement 12-15-2014
Galley9399 #182506 06-17-2014 06:50 PM
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Thats exactly why we are here... to help you and others who need some help. We are one gigantic family that stretches across the entire world.

Never know, our paths could cross one day. I attend alot of the OCF oral cancer awareness walks. It would be my pleasure to meet you in person and have a long face to face chat with a few hugs thrown in too smile

We are all in this together. Nobody gets thru it by themselves.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Galley9399 #182512 06-18-2014 05:14 AM
Joined: Sep 2006
Posts: 8,311
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My 1st chemo was bad but my second was like "are you kidding me"!!! Aquaphor worked on my neck but I really didn't get the burns until post Tx and they weren't as bad as most.

Just be prepared for some really rough times probably starting right about now. It's pretty normal so don't get paranoid but it can be frightful. Just count the days until about 2 to 3 weeks post Tx when you both can start to breath easy again.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Galley9399 #182753 06-23-2014 05:55 PM
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You can do saline soaks on the burns three or four times a day and then cover the burns with a drainage sponge with some barrier cream. You can buy the saline from the pharmacy. It helps with drying out the burns and hastens the healing. Like David above says, the burns will continue after the treatment is over.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Galley9399 #183416 07-16-2014 10:14 AM
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For the burns I had good luck with coconut oil mixed with lavander oil

Galley9399 #183446 07-17-2014 08:07 AM
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The one thing that has gone really well in my husband's treatment is the healing of the outside of his neck. I am chalking this up to a fancy french cream that I bought. A friend who had gone through breast cancer radiation recommended it, said it worked wonders on her burns. It's not available in the US, so you have to order it from France, which is a bit expensive, but so worth it. It's called "Biafine". In France it's used for surgical scarring and treatment of radiation burns. My husband was a bit skeptical, but I told him that French women know a thing or two about skin care. We bought it and he used it after every radiation treatment for the last 2 weeks of his treatment and every day afterwards. Everyone at his doctors' offices were amazed how fast his neck healed. It looks great! Thought I would share because it worked so well for him.


Caregiver to husband, scc bot, stage IV, cisplatin x3, radiation 5x week for 7 weeks. PET due end of July. No surgery except for peg tube.
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